Thursday, January 31, 2013

One Week After Surgery

We woke up today, I laid Piper down so I could change her diaper.  As I changed her, I could see that there was tissue that was moving on the top of her mouth where her Palate repair was done.  I really was hoping I was imagining it but I was not.  As I peaked again, it was definitely moving.  I immediately called the Surgeons office hysterically crying because I really thought that the whole palate repair had failed.  I was so upset.  The lack of sleep was also not helping this either.  After the week we have had, I honestly did not want her to have to go through this whole thing again.  That is where my mind took me.  The nurse talked to the doctor and had us come right into the office.  Thankfully the girls were lined up with friends who had offered to let them come to them so that we could try to get some rest and catch up on some sleep.  That was one thing I did not have to try to tackle.  I called my mother in law and asked her to pray.  Pray that I was wrong and that it really is all fine.  She said that she would come with me if I wanted her to.  I was really happy that she had offered to do that.  God knew I needed her that day.   We drove to the city to have the doctor take a look at her palate.  We walked in and there was another doctor sitting there-Dr. L and our doctor Dr. J.   It was really assuring to see that they were both there to look at her.  Dr. L trained the doctors there and he has been doing this for a long time.  He will actually be retiring in about 6-8 years.  It was also like getting a second opinion without asking for one.  They looked in her mouth and confirmed what I saw.  The piece of tissue detached from the right side of her palate.  It was literally hanging in her mouth by the time we got to the doctors office.  They said that they did not want to touch it.  It was better if we let things do what they needed to do naturally.  If they were to remove the tissue that was hanging it could have been traumatic for her.  My concern was that I did not want her to choke on it.  As soon as the palate detached this little girl started to drink her bottles like a champ.  Let me say she started drinking the WHOLE bottle each time I gave it to her.  What a difference from the last week.  They decided we should just wait and see how things heal.  Mouths heal unbelievably well. Children also heal well too.  For now we will have return visits for them to watch her mouth to see if it will heal itself.  We went home and I watched her.  It was amazing how things turned around after it detached with drinking. She continued to drink her bottles really well.  When I was putting the kids to bed, daddy had Piper downstairs.  She was sitting on his lap and started coughing.  She coughed out the piece that was hanging and it landed right on the floor.  I was so happy I was not in the room!!  Sorry to gross you out.  Just trying to be honest in case anyone else experiences this.  Although they did tell me that it is really rare that any palate repair has detached in any way.  We are definitely making friends here at the hospital with all of this.  We will wait and see what happens.  I will keep you posted.  Thank you for all of your prayers!

Wednesday, January 23, 2013


We woke up got ourselves into the van to head to the hospital.  We picked Piper up from her crib, and brought her blankie and binky with us.  She remained asleep even as we walked into the cold to put her in her car seat.  We had to be at the hospital by 6:30 AM so we had to leave pretty early.  It was the hardest thing leaving our house knowing what Piper was going to be going through in just a short time.  The poor thing was sleeping so peacefully and soundly.  It broke my heart because there was no way to prepare her for what was coming.  I don't even think I was fully prepared but I know I needed to be in full gear to get through and be there for her.  We pulled into the hospital and walked in and registered her.  They had us go in and get her changed into her hospital gown.  She was so happy, playing with some of her toys that I brought with us.  She was so happy to see all of the doctors and the nurses too.  Her surgeon came in to evaluate her and they wanted her to be evaluated further to make sure she was okay to have the surgery done today because she had been sick with the flu a week ago.  The nurse practitioner came in to evaluate her and she gave her the green flag for surgery.  The ENT doctor came in to discuss her ear tubes.  I have to admit I was not for the ear tubes from the beginning even though I knew that 90% of cleft patients have to get ear tubes placed.  She had not had any issues with hearing (that I thought anyway) and she had never had an ear infection so I was wondering why in the world does she need them.  I had had them as a child 3 times.  I had MANY ear infections and really struggled with them.  I still to this day can remember the pain of an ear infection.  Due to the amount of times I have had them, I have a build up of scar tissue in my left ear.  If I am around loud noises, concerts, or even when my kids really cried my ear crackles like a speaker going bad.  It is terrible!!  I do not want that for her at all.  So when the doctor came in I was asking my million questions.  He tried to tell me that the tubes are not the reason for my ear issue however I have been to a reputable doctor in the city who told me that it was.  My husband said the look on my face was definitely telling the doctor that I did not believe him.  So anyway after discussing some things I told him I was hesitant with the tubes.  He was not pushy in any way which I really respected.  He said why don't we do this.  When she is back in the operating room, I will take a look at her and if she has fluid in her ears we will put the tubes in and if not then we will not do that part of the procedure today.  I felt SO  MUCH better going into it with that mindset.  After we met all of the doctors, the nurse came in and gave her the "giggle juice."  She drank it no problem.  To me after a bit it didn't seem to do much for her.  She still just really wanted mommy and wouldn't even go to her daddy.  I was starting to get nervous about the handoff was going to be.  The time came and the nurse came in and was ready to take her back.  He reached to her and said lets go for a walk.  She went right to him.  Of course, as soon as she started to walk away I just started crying.  I felt so bad.  We had been together for such a short time.  I just wanted to make sure she would trust me and feel okay afterwards.  We went to a waiting room and waited and waited.  Finally we got an update.  She was doing well.  She went to sleep very nicely.  She didn't cry or anything.  That made me feel a little better.  The ENT doctor came out to talk to us.  He said he really felt good about our conversation and even shared our discussion with his colleagues.  He said he respected my concerns and was happy we went into it like we did.  He did say she had fluid in her ears so he did put the ear tubes in.  He said he really feels like she will be able to hear so much better and it will not hinder her from being able to learn English and progress with learning.  I had a different respect for him.  I was thankful he was not pushy and allowed us to go ahead with the surgery like we discussed.  The last thing I wanted to do was hinder Piper in any way so I was thankful she had the tubes placed.  We had multiple updates from the nurses.  The surgery was going well.  The surgeon removed the mole from her foot first and then moved on to her palate repair.  It took 3 1/2 hours to do her palate repair.  The surgeon came out when she was all done and told us that Piper had one of the widest palates that she has ever done.  There was a lot of pull.  She seemed confident in the surgery.  Everything went well.  We wait a little longer and then we got to see our precious little girl.  When we walked back, a nurse was holding her and giving her oxygen.  Nothing could have prepared me for what Piper was going to look like.  She was so swollen in her face, really bloody, and she had her no no's on her arms.  She looked terrible.  She started was really restless with the nurse and she was crying.  When I went into the room, the nurse handed her to me.  As soon as I held her, she stopped crying and just went to sleep.  It was the best feeling ever.  She knew her mama was there!!!!!  She was in and out of it for awhile.  She had so many fluids during the surgery her diaper needed to be changed so after a bit I changed her.  She seemed so fragile after the surgery I almost didn't know how to handle her.  I managed to change her more in slow motion.  We made it!  We were in the recovery room for quite some time.  I had to keep giving her oxygen because her oxygen levels kept coming down too much and the alarms would go off.  When she was sleeping she always knew when the oxygen was coming to her face.  She did not want anything near her which I don't blame her at all.  She did want to try to drink from her bottle.  Daddy mixed up her bottle and really tried but just couldn't do it.  She would get upset and frustrated but it just seemed to hard to do.  I am sure with time this part will get better.  We waited a bit and then got news that we were being transferred to her room where we would be staying.  She was being transferred to her own room and it was a large room.  I was extremely happy not to be sharing a room with anyone else.  I am staying with her the whole time at the hospital.  My in-laws have my other girls.  I am so thankful for their help!!  I know the girls will have fun with them too.  Daddy had to go back to work so he could only be with us the day of the surgery.  I am a little nervous to stay by myself but we will get through.  There are so many great nurses here.  They have assured me they would help!!  Please pray for her as she heals and pray that she will allow me to comfort her during this time.  Pray for my other girls while they are in transition dealing with her recovery.  Here are some of the pictures before she was taken into surgery.  I am not posting any pictures from afterwards. 

Tuesday, January 22, 2013

Surgery Tomorrow

Surgery is tomorrow.  There are so many things going through my mind as I prepare for my daughter to have her first surgery.  Two of my biological daughters have had surgery.  Isabella had surgery to have her tonsils and adenoids removed when she was 5 and Audyn had surgery to have a pilomatrixoma removed from her face when she was 1.  I honestly believe that those two surgeries were to prepare me for this surgery that I was going to be experiencing with Piper.  I was nervous for my bio daughters to have surgery but I cannot explain exactly the real nervousness and feelings that I have for Piper.  It is nothing I have ever experienced before.  I know she has only been with us since September, which is really not a long time.  She is still adjusting and our attachment and bond gets stronger every day.  My heart breaks knowing that she is going to be going to the hospital to have this major surgery done.  There is no way to prepare her for this at all!!  We go in and boom it will be done.  I just feel terrible!!!  I am honestly so grateful that she is in our lives.  More grateful that we can have this surgery done.  I know it is all being done for a reason.  I know.  Trusting God that he will have her in his hands tomorrow.  Please pray for her and us!!  I will keep you posted.

Wednesday, January 9, 2013

Happy New Year!

Happy New Year!!  Our January started off where we all had gotten hit by the terrible flu that was going around.  It first hit me.  I cannot remember a time where I was so sick.  I honestly could not get out of bed for two days.  My in laws were WONDERFUL and came and got the girls.  The one thing I was so nervous about was that Piper had three doctors appointments lined up at the hospital.  She had an appointment lined up with the ENT, (Ear, Nose and Throat Doctor) to see if she needed tubes placed in her ears at the time of surgery, an anesthesiologist appointment for them to evaluate her before the surgery, and the dermatologist to see if the mole that was on the bottom of her foot should be removed also at the time of surgery.  It was a big day where we needed to drive to the city about an hour away to meet with the doctors.  All of the appointments were squeezed in so to speak so that everything could be lined up for surgery at the request of our plastic surgeon.  I woke up on Wednesday determined to take my daughter to the doctors appointments but I stood up and realized that I was going to pass out and I still could not stand up yet.  Thankfully my Mother in Law had offered to take Piper to her doctors appointments.  She is WONDERFUL!!!  I am honestly so thankful for her.  She took her and then had the doctors conference me in while the doctors were examining her so that I could hear everything that was going on even though I could not be there.  I still got to ask all of my questions!!  It was amazing!!  After the appointments it was determined that she needs tubes in her ears because she does have some fluid in them.  I cannot say I was excited about this because as a child I had tubes in my ears 3 times.  I have some scar tissue built up in my ear and when I get around loud noises my ear will crackle like a speaker that is going bad.  It is really awful when it is happening.  I asked all of my questions and it was determined that the doctor recommended putting tubes in.  I am trusting God that he has her in his hands.  I know he is protecting her and will guide us as we go here.  I know that approximately 90% of cleft patients need tubes placed.  I obviously do not want to hinder what she can hear or her speech for that matter.  It was also determined that the mole on the bottom of her foot should also be removed.  Any moles that are on the inside palms of your hands or on the bottom of your feet should be carefully watched because they can change over time.  The doctor said that he would not just recommend her getting the mole off just to have it removed but since she was going to be having surgery it just made sense to do it now.  I would have had to take her back to the dermatologist every year to have it evaluated.  I am honestly really sad to see it go.  I love her little mole.  It is part of who she is.  Part of how God made her.  I have struggled even with the palate surgery as much as I know that she really needs to have it done that God made her this way.  I don't want her to have to be changed.  It may not make sense to a lot of you.  I love my little girl just the way she is.  I am so thankful that I did not have to see her with her cleft lip before it was repaired.  I would have felt the same way then too.  You fall in love with them just how they are.  To see all of the pain and discomfort from surgery to change her is difficult.  I know the end result will be the best for her.  I know that.  She will be able to speak and use her palate and also eat and not have food get stuck in her palate.  Please pray for our family as we get better from being sick and also for her surgery that is taking place on January 23rd.